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Relationship Poison: Narcolepsy

I dealt with symptoms for a long time before being diagnosed with a sleep disorder. I estimate that I’ve struggled with it since I was in my early twenties. However, it wasn’t until I was 29 that I was finally diagnosed. For years in my 20’s I would tell therapists that I had a hard time waking up, and how I struggled all the time with drowsiness. It wasn’t until I experienced sleep attacks, and drowsiness to the point of limited functioning did I aggressively seek an answer. I finally found one four months ago with the narcolepsy diagnosis I mentioned in a previous post. I’ve taken medication for it and it makes me feel more awake during the day, but waking up is still very difficult. It sounds cliché because I know everyone doesn’t like to wake up, but there is a difference between not liking to wake up, and not being able to. That is what people who don’t have a sleep disorder seem to have the hardest time understanding.

It is not a conscious decision to not wake up. I never say to myself, “I’d rather stay in bed and just relax”. Instead there is this feeling of high anxiety (because I know I should be waking up) and a feeling that my body holds me hostage and doesn’t allow my mind to override it. Over the course of about 10 years it has caused problems in all of my relationships; both personal and professional. When I was working an 8-5 job, I was late more times than I’d like to admit because every single day was a struggle to get out of bed and also to stay awake during the day. It doesn’t help matters that my pain is worst in the morning, which adds to the complexity of my struggle, however I know it’s the narcolepsy that plays the biggest role. Often I wake up, take medicine and go back to sleep so that when I wake up a short while later, I’m not in as much pain as I would have been. Frequently I’ve tried to wake up, taken my medicine, but accidently fallen back asleep. This has caused me to miss doctors appointments, scheduled plans, and people visiting me at home. It’s an embarrassing and stressful thing to have happen.

It’s hard for anyone who doesn’t have this condition, or a similar one to understand, but I’m trying my best to explain it. It’s hurt a lot of my relationships because there is a lack of compassion that comes along with the lack of understanding. It’s difficult to be sympathetic towards someone who sleeps a lot I suppose because you may feel that they are just being lazy. Of course that is the situation for some, but for someone like me, who has always been an extremely motivated person, it feels like a curse. Up until the beginning of this year I worked full-time my entire adult life. I had multiple jobs throughout high school, undergrad, and into my adult years. I worked full time while getting my Master’s Degree full time, in addition to maintaining a household. I’ve always given 110% to my life in my opinion, but lately this sleep condition in combination with my pain has become a very big burden to my life and my relationships.

I take the judgment of others very hard; I feel very aware of those who judge that I should be awake early during regular business hours. I never have discussions with people to explain that physiologically I’m different from them. I suppose I could tell them that due to low levels of the neurotransmitter hypocretin, which promotes wakefulness, my biological process is different than theirs. There are some false beliefs held by others that I often run into with regards to the sleep disorder. One belief is that people who have narcolepsy spend the majority of the 24hr day sleeping. This is untrue in my situation; I’m typically most awake in the afternoon, evening and early morning and generally sleep through the morning, sometimes into the early afternoon. I need about 10 hours of sleep to feel rested which is about 2 more hours than the average adult needing 8, but it certainly isn’t 12+ hours like people assume. Prior to my medication I needed more sleep or time to lay down due to the drowsiness, but as long as I’m taking my medicine and not laid up from my pain, I feel pretty alert when I am awake. Another common belief is that I must be well rested if I get more sleep than other people; this couldn’t be further from the truth. One of the biggest issues the condition causes is a lack of restorative sleep. Restorative sleep is the kind of sleep that leaves you feeling rested and mentally collected. My poor sleep quality leads to more time in bed resting, and a higher sensitivity to the pain I already experience.

What I wish the people in my life knew was how hard I am trying. I wish there was more compassion in my life for the times that I do need to sleep longer hours, because it’s not a decision I’m making purposefully. My body is forcing me to stay asleep or go back to sleep, and if there is one thing I’ve learned in pain management, it’s to listen to your body. Some more compassion would hopefully leave me feeling less guilty and stressed, which in turn would help my overall health. Since managing the condition with medication is a temporary Band-Aid and not a cure, I feel like I’m always fighting my situation.

Some loved ones of people who deal with pain and/or sleep conditions educate themselves on the topics, attend support groups, or receive counseling from pain management specialists. Right now no one in my immediate circle seems interested in those options. I don’t know if it is because they feel they don’t need it, or because they don’t think our situation warrants it. All I know is that the sleep condition, in combination with the chronic pain condition has made the last couple years of my life extremely difficult. I’m going to post some links to articles and helpful sites in the “Resources” section. Whatever information I can gather, you can guarantee I will share, but also try and implement. I will post an update to my situation within the next few weeks to see which tactics in the “Resources” section were most helpful. Until then…

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